On The Verge – Find Your Daughter Blood, Or …!

princess opalemo

princess nike opalemo

In adulthood, sickle cell turned a benign face upon the same individual it pummeled so hard in the early years. Princess Nike Opalemo experiences less frequent and much less severe crises these days. Physically too, things have turned around so well that you would never be able to tell that she has sickle cell anaemia except she tells you herself – a far cry from days of yore when schoolmates regularly taunted her for her fragile looks.

In primary and secondary school, Nike kept to herself – rather, her mates ensured she kept to herself. Because she was usually that pale, they nicknamed her ‘Pale-Face’ – and because she seemed so weak, so fragile, they exempted her – banished her, really – from their activities.

‘We don’t need your type to engage in this with us,’ they would admonish her whenever she attempted to join their girlish doings, ‘you would melt in the attempt!’

Nike was constantly reminded that she was not one of them, not one of the inner circle. Sure, the sickle cell made her to look – and feel – very weak, yet her schoolmates made it worse by branding her with a stamp of uselessness!

 

Not many of Nike’s schoolmates would ever forget the suddenness with which their colleague descends into sickle cell crises. On many occasions, sometimes in the middle of a lesson, sudden and severe pain crises would drag her right from classroom to hospital bed. Quite an eyeful she gave her mates of the unpredictability of the illness called sickle cell anaemia.

Nike studied Sociology at the Olabisi Onabanjo University (OOU) in Nigeria. Here, as in secondary school, she lived in her own shell. Although she had never been ashamed to tell people she was living the sickle cell challenge, the looks people gave her when they knew – and the things they said afterwards – made her to steel herself against the outside world.

 

Oversight

After graduation, Nike proceeded to London, where she studied Healthcare and Nursing.

Something in relationships that would lead to parenthood (if not marriage) often prevents many couples from ascertaining their genotype before settling down. It was not until after the birth of her first child that Nike knew her husband’s genotype – AA.

Nike is quick to accept that as an oversight – what if, by mischance, her man was a carrier of the gene combined in her? For a nurse who had seen lots of children and adults in sickle cell pain – and who herself was with sickle cell; and for a nurse who was determined to whittle down the incidence of SCD by carefully choosing her spouse, it was indeed an oversight. An unforgiveable oversight, she would ever admit.

‘Had my husband been anything but (AA),’ she asserts, ‘I would have stopped having children after the first one.’

 

Nike Opalemo Sickle Cell Foundation (NOSCF)

opalemo sickle cell event

princess nike opalemo scd programme

To add her own quota to sickle cell awareness in Nigeria, Nike founded her own Sickle Cell Foundation in 2009. NOSCF conducts blood donation campaigns and also gives moral and material support to individuals and families facing the sickle challenge.

’I wish I could wave a wand and take away the pain and anxieties of everyone living with SS,’ she says.

To Nike Opalemo, it is forgivable if a couple were ignorant of their genotype and gave birth to a child or children with sickle cell.

 

‘To know one’s genotype and its implications for a child,’ she says, ‘and still go ahead, for love or passion, to produce a child with sickle cell, is the height of cruelty.’

Nike is critical of couples who, under the catch phrase of ‘informed choice’ go ahead with marriage to give birth to offspring with sickle cell.

‘These couples often declare they are prepared to raise and cater for a child with sickle cell; yet they have not thought out whether the child they are bringing into the world is prepared to live with the disorder.’ In Nike’s opinion, the equation is grossly unfair.

 

Blood, Blood, Blood

scd awareness event

princess nike opalemo sickle cell foundation events

Nike Opalemo strongly believes in giving back to society. Unfortunately, in matters to do with blood, she can only take but not give!

Of the many rounds of blood transfusion Nike had undergone, one episode remains etched in her memory…

 

Blood Now – Or Never

About 25 years ago, Princess Nike Opalemo lay on a hospital bed in Lagos, waiting for a desperately-needed blood transfusion. Her mother had gone in search of blood; her father was at work. The doctors said the patient must have blood within one hour, otherwise she would die.

Although on bed, Nike was feeling very, very tired. She had overheard the one-hour ultimatum the doctors had given and she kept glancing at the wall clock opposite her bed: would her mother emerge at the door with blood – or was this going to be the End of the Road?

Nike’s concentration was poor but she remembers that five minutes before the psychological moment, her mother had not arrived. As she fell involuntarily into a deep sleep that was more like a coma, she thought perhaps it was the End of the Road.

 

Consciousness Regained

‘I regained consciousness,’ Nike recalls, ‘to find blood dripping into my veins.’

Her father it was who saved the day. His wife had called him in to assist with the hunt for blood after failing to procure the substance on her own. She had warned: Get your daughter blood within 20 minutes or …

He had hurried from the office barefooted, made enquiries from a passer-by and was directed to a nearby blood bank. The passer-by had been quite frightened less by the urgency of the enquiry as by the manner of the enquirer.

‘I received the much-needed substance – and lived to tell my story.’ Nike says.

She would receive blood again and again in the UK and in Nigeria, but none so dramatic as the one just related.

‘Without blood – without public-spirited blood donors – I wouldn’t be as healthy as I am today.’

Oluwatobi Kehinde Lala – the biomedical bloodhound

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Life with Sickle Cell Disorder, as with life in general, has its ‘up’ times and ‘down’ times. With SCD, even in those so-called ‘up’ times, one is chronically at risk of being pulled down at any time.

Oluwatobi Kehinde Lala, a biomedical laboratory scientist at the University College Hospital, Ibadan, Nigeria is so conscious of the vicissitudes of life with SCD that he gives all his attention and his entire mind to any task at hand. His hours are long and the work both demanding and hazardous. The highly infectious pathogens he works on are no match for a determined investigator.

‘My colleagues say I’m a workaholic,’ Oluwatobi admits, ‘they don’t know that with SCD – much like the Boy Scouts – you have to ‘Be Prepared.’’

Prepared, for what? Prepared, he says, for the occasional absence from work due to those unpardonable down times spawned by the world’s most commonly-inherited blood disease.

Twin Brothers

Oluwatobi, along with his twin sister, was diagnosed with sickle cell anaemia shortly after birth in 1981. Their immediate elder brother, the family’s second-born, was similarly with sickle cell anaemia, the reason the twins were screened so early. One more child would be born after the twins and he, like the first born, would be free of SCD. Thus the Lalas had five children, three with HbSS.

Yoruba culture does not permit a king or a child to die. When a king dies, his subjects say he has ‘migrated to the ceiling’; when a child dies, s/he is said to have ‘travelled’.

Puzzled as to the sudden disappearance of his sister, Oluwatobi, then 6, often asked his parents of her whereabouts.

‘On each occasion, I was told she had gone abroad,’ he recalls. ‘I accepted what I was told, but a part of me knew it was a lie!’

 Blood Transfusion, Blood Studies

Oluwatobi had more that his fair share of severe anaemia warranting blood transfusion. He was always amazed – and grateful – at the renewal of his strength and vigor after each episode. He often wondered what the element was in the red watery substance that transformed waning health to sound health.

By the time he left secondary school, Oluwatobi knew what he wanted to be: a blood detective, so to speak, a hound sniffing out trouble within the human frame before, during and after the emergence of symptoms. Years later he graduated as a biomedical scientist and has found a niche helping doctors and clinicians track down, treat and manage a variety of health conditions, including his own.

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Blood Drive Initiative

With a flock of like-minded medical laboratory professionals and undergraduates, Oluwatobi runs a non-governmental organization called the Blood Drive Initiative. The main objective of BDI is to sensitize Nigerian youths to the necessity of helping to raise and maintain the country’s blood supply at an optimum level. Anyone can need blood anywhere, anytime, BDI pronounces. For some with health conditions like sickle cell and thalassemia, the need for blood is constant to reduce the likelihood or severity of complications.

‘Donating blood not only saves lives,’ Oluwatobi says, ‘but it comes with lots of health benefits for the donor.’

 

Blood Transfusion – My Story

ayoojideDiagnosed with sickle cell anaemia at the age of two in Lagos, Nigeria, I remember having my first blood transfusion at the age of six. That first transfusion episode opened my eyes to the value of blood in the maintenance of good health. I felt so strong and so rejuvenated that I made a mental note to ask for blood anytime fatigue and headache – my brand childhood complaints – reared their ugly heads.

Over the years, what with frequent attacks of malaria, I had blood transfused now and then – like once in every three or four years. In those days, the cynosure of negative extended family attention, the one for whom the word goes out about being in emergency need of blood, I likened myself to an old wagon, a headache to its driver, a liability to its owner!

Each time, in the process of having a transfusion, I used to wonder who it was that donated the blood. As I watch blood course through rubber into my arm, a sense of oneness with other human beings would take hold and I would feel grateful that someone out there had sliced off a bit of themselves to keep me in good health!

It was a shock to learn later on, when I wanted to reciprocate, that I could never donate blood. That gave rise to a heightened sense of respect for blood donors and for those who conduct blood campaigns.

I took blood on several occasions at other hospitals in my hometown and in Lagos. On other occasions, I was given hematinic tablets to help improve my blood volume as doctors decided a transfusion was not urgent.

A lucky introduction to a herbal phytomedicine, while I was on admission at a Clinic in Lagos once again, marked a turning point in my proclivity to live on other people’s blood.

It was 2004. I was on admission for malaria, typhoid fever and, at a PCV of 11%, dangerously short of blood. I was listless as I heard the doctor tell my wife I needed to have blood – and urgently.

Prior to my admission, I couldn’t take 10 steps without pausing to rest for a few minutes. A bit of exertion left me breathless, heaving and gasping. Extreme tiredness is evil.

My wife offered to donate her own blood, but the doctor refused. Then, speaking her thoughts, she complained half to herself and half to those within hearing range, that she was tired of ‘blood today, blood tomorrow’. She had only seen me take blood once but that was once too many times for her.

Calling her aside, a woman whose child was also on admission, asked my wife to buy the phytomedicine and administer it thrice daily.

Within 10 days of taking the phytomedicine, my PCV rose to 27%. I, that couldn’t take more than a handful of steps without being deathly breathless, now took brisk walks and sprinted without a hint of fatigue. The improved blood volume was nothing short of a miracle for me!

I took part in the clinical trials for this unnamed phytomedicine at the Lagos State University Teaching Hospital in 2012. There, senior nurses at the haematology clinic told of SCD patients with significant anaemia restored to health within days by the administration of this same phytomedicine.

It is 12 years now and I have not taken anyone’s blood. Thus, whenever a well-known Nigerian old school haematologist  condemns this phytomedicine and indeed other known plant-based hematinics as ‘useless’ for sickle cell, I used to shake my head at the disservice he is doing to the SCD community and indeed to the continent. Here is a continent in which blood donation is hampered by all sorts of myths and taboos, a continent where blood supply is persistently low relative to demand, a continent where voluntary blood donation is tearfully low relative to the number of potential donors.

The astronomical cost of blood is another reason many embrace alternative means of boosting their own blood. I personally know individuals with sickle cell who, on hospital bed, resorted to smuggling in vegetable and plant blood boosters. African native pharmacopeia is replete with known hematopoietic plants awaiting scientific attention.

For me, whether blood comes from other people directly or indirectly from a plant or food supplement, blood is a healer, a health and life restorative. With SCD a blood disorder and chronic blood shortage its principal accompaniment, a good and adequate blood supply, internally and externally, is our #1 hope for survival.

Sorghum

Key Entry Rules

  1. You must be someone with Sickle Cell Disease or have some strong connection with SCD through kinship, friendship or caring responsibility.
  2. Your story – which must be true and should include some aspect of the importance of blood in the narrative – must be between 200–2,000 words.
  3. We expect most entries to come from Africa, but where you live is less important than the story you have to share.
  4. Stories must be submitted by the contest deadline of 30 September 2016.
  5. Photographs and other media can be included and are very much encouraged.
  6. First, second and third place winners will be awarded a monetary prize of $500/$350/$250 respectively. There will also be two special $125 prizes for standout young contestant (under 16) and standout health care professional, if not represented among the overall winners.

Story Criteria

Contest Rules

Past Winners